SUDEP Action

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Epilepsy Deaths Registration Gains Momentum

22nd May 2013
Nearly 200 people have already registered with The Epilepsy Deaths Register since the end of March, 2013.

The Epilepsy Deaths Register is the only single point for reporting all epilepsy-related deaths in the UK.  It is supported by researchers, professionals and endorsed by government.  Epilepsy is among the top ten causes of premature death.  To help prevent future epilepsy deaths, we need to find out what happened in as many cases as possible.  

Alex Stirling whose sister died from SUDEP recently registered, she said: “It was quite simple to complete and it helps me to know that the information will be used to raise awareness, help research and improve the lives of people with epilepsy”.   

Dr Henry Smithson who is providing research support for the registry said: “Every death reported is a tragedy, but provides the vital information we need to prevent deaths in the future.  Researchers are indebted to the families who have already registered and have meant we have an excellent start to the register.” 

SUDEP Action Chief Executive Jane Hanna OBE said: “Registers of epilepsy death are a vital new development in work on prevention across the world.   We need everyone who knows of a death to report and we need as many supporters as possible joining our campaign to develop the register”.

At the same time development of national registration of sudden epilepsy deaths is at the forefront of action to address SUDEP in the US.  Campaigners and policy makers are working to raise awareness amongst Coroners and medical examiners who can play a key role in recording deaths which can help to educate the public.  The Illinois senate in the US passed a Bill to improve awareness and gather information concerning sudden unexpected deaths in epilepsy (SUDEP) last month. The senate heard of the experience of families in the US including the death of 4 year old Danny, who lived with epilepsy before dying from SUDEP following a seizure that occurred during his sleep. His family was never made aware of the possibility of SUDEP.  

State Senator Dan Kotowski (D-Park Ridge) who put together the proposal said that the register can help save lives by providing information that furthers research and hopefully one day can prevent sudden death for those with epilepsy .  Read more from the Chicago Tribune.